Ten years ago, I suffered a debilitating spinal injury. I went from being an active, vibrant young woman in my twenties to feeling and looking like an octogenarian. It was excruciatingly painful to lift my arms, stand, or lie down. I struggled with depression, worried about the future, and found it nearly impossible to care for myself. I started to feel ashamed of my worsening condition and asking for help became a daunting task that I avoided.
The emotional and physical struggle of living with chronic pain doesn’t only affect those who suffer from it; it also affects loved ones, friends, and family. People living with pain often suffer invisibly, and it can become exhausting to constantly explain a chronic condition, visit with doctors who aren’t sure what might help, or to stay fully employed. It’s not easy to ask for help for fear of being considered a burden.
When my pain was at its worst, I often couldn't execute "simple" everyday tasks, such as the dishes, cleaning the fridge, taking out the trash, etc. I felt like I was burdening my friends, family, and my boyfriend; worried they’d think I was always whining for help, and appearing weak and helpless.
Asking for help felt unnatural to me. I was always the one to provide support, not ask for it. I’d identified as a “do-er”: always on the go and (enjoying) getting things done. So I tried to appear as strong as possible, downplaying my pain and my struggles, so as not to scare off my friends. Instead, my plan backfired. Isolated - because my friends had no idea just how severe my situation had become - I became depressed and frustrated, distancing myself from people for fear I’d be judged for my helplessness. My boyfriend and I broke up. Sometimes, I would have to practically beg someone to come to my house and wash my dishes or take out my trash, or buy me some toilet paper; things that I couldn’t do in a wheelchair.
Then, one day, I started to envision the future and I realized that I couldn’t continue isolating myself just because I didn’t feel comfortable asking for help. I felt like I had woken up from a hazy dream and that I finally knew what I needed to do. I needed to help myself, which meant that I needed to effectively communicate to and inform those around me, so that they could properly help me help myself.
I started writing emails and letters to my friends and family (both near and far). I made lists. I shifted my thinking about what it means to really ask for help, and I realized the power that can come from it. It’s a power that means: “Hey, I value this body and I need to care for it. Right now, that means that I need someone I trust to help me practice some self-care.”
I started to recognize that by distancing myself from those around me, I wasn’t doing myself or them any favors. To some degree, I was discounting my relationship with them out of fear that they wouldn’t step up to the plate. That’s when I decided to take action and reach out.
The next time you find that you are overwhelmed with the idea of getting through your day while living with pain, consider these helpful steps:
First, start by noticing things that you do (or try to do) in your daily life that could be done by (or shared with) another more able-bodied person.
1. Make a list of all of the people in your life who may be able to and willing to help you.
Consider including those you love who are both local and long-distance.
At times, I really needed someone to call me each day to just connect over the phone or Skype. I spent so many days alone in my apartment that I often didn't interact with another human for days. It was practically life-saving for me to hear from a friend or family while confined to my home.
2. Make another list of things with which you need assistance.
Start small. Ask for help with small requests and see how it feels. Identify what you need. It sounds obvious, but this simple step is often one of the reasons we can feel resistant to asking for help. We can’t ask unless we know what we need. Be specific and give a timeline. It’s a lot easier to help someone if you know exactly what they need and when they need it. Avoid being too vague and don’t give open-ended requests. This might include things like grocery shopping, dishes, going out to lunch, walking the dog, driving you to doctor appointments, or picking up your mail. Be creative. It can even include things like a weekly phone call where you and a friend do a crossword, or watch a funny movie on Netflix "together". This is all about doing what makes you feel supported and less alone, helpless, and overwhelmed.
3. Write a letter to your partner, best friend, and other loved ones you identified in #1.
Be as open as possible and remember to be yourself. If you feel comfortable, a dash of humor and good-natured playfulness can go along way. However, you'll still want to maintain the importance of the subject at hand. I suggest a letter, instead of email, because a letter can carry so much more value and begs for more attention and reverence than an email.
Don’t be afraid to be vulnerable. Let people know about how challenging you’ve found it to ask for help. Tell them you appreciate their friendship, and that you hope that they can continue to stand by you during this really difficult time. It's important to help them understand that even though you have pretty significant changes to your body and capacity to do things, you are still you.
Be honest. Let them know whether (or not) you are feeling properly supported by them so they can better see if they are being there in the way you need them to be. Sometimes, friends think they are being supportive by continuing to be there for you in the same way they have in the past. However, now that chronic pain has crept in, it means that you most likely have different needs than before and this changes your relationship.
Choose a few things on your "things I need help with" list that they might be able to do with or for you. Be direct. Tell them what you need and when and ask if you can call on them for this specific help.
Ask them to to suggest other things that they might be willing to do with or for you. For me, two friends simply set a standing weekly date to take me out of the house for tea or lunch. It was a blessing!
Close the letter by genuinely thanking them and letting them know that they can ask you any questions about your condition and what you are able and not able to do. This will help to properly inform them of your current needs and challenges.
4. Remind yourself that not only are you doing this out of love and compassion for yourself, but also for the love of your friends and family.
You are being open and honest with them, so that they can help you be your truest self, even while living with pain.
5. When you do receive help, remember to say thank you.
A simple note, phone call, or small gesture like treating them to lunch can be all that they need to know you appreciate them.
In the end, I did receive quality help from many dear people who, when asked for help, took the time to listen to my needs and then find creative ways to support me. Our relationships grew stronger. Unfortunately some were not so receptive; I was in my 20s, in chronic pain, and many of my friends just didn’t understand how, why, and what I was feeling. It was just easier for them to distance themselves from my struggles, and our relationship suffered. As devastating as this was (and it was really, really sad), looking back, I realize how it made my other relationships that much more solid and special.
The experience of learning to effectively communicate your needs and ask for help can teach you more about yourself (that you’re a strong, capable person who values your health and your well-being), and what you want in friendship (two people who are unconditionally supportive of one another). Ultimately, learning to ask for help when you need it will remind you of how strong and resilient you really are, so that you can lift others up when they need it in your own way.
Shelly Jackson is a writer, chronic pain coach, and producer of Painiac: The Podcast for Mindful Pain Management. Shelly’s lived with chronic pain for over a decade, but that’s ok because now she’s got super powers.